Hi Alan

Great news about biopsy going smoothly.  I hope you are still comforntable this morning .  No stitches has to be a bonus .  

My dad had a peg fitted last year when he was recovering from a brain haemorrhage.  He had it done under local and it was  pretty hassle free for him .

It is good they are planning ahead well in advance . 

Hopefully your PET scan wont be necsaary . (fingers crossed) 

All the best for now

Jo

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Hi Jo,

Amazingly still pain free today!.....I have a sore throat from the tube but no pain from my tongue.....I'm hoping it stays that way but don't want to tempt fate!.

Chilling on sofa now but may go out for a walk soon as its such a beautiful day.

Feel like that was a massive psychological hurdle for me yesterday but looking back it was fairly stress free in the end. I certainly won't have any fear about going under again if I have to.

I hope you are well?

Alan

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Hello Both

An update:

Met with my consultant yesterday and was confirmed i have cancer.  I am awaiting a pet scan too  and some more info on biospy . Presently it is presenting as squamous cell but they are checking no deeper tissue involved.  Forecast is 6 weeks radiotherapy and some Chemo .  A peg will also be fitted .  Had teeth xray and likey some teeth will need removing before treatment 

In a daze today . Spent most my night crying even though I was prepared for cancer it still feels like I  have been struck with a wrecking ball 

Hope you are still pain free Al and hooe you get some  postive news Sue on your next appt 

All the best both

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Aww jo I am heartbroken for you and so sorry to hear that, I have everything crossed for you that it isn't deeper or anywhere else. Wishing you an easy time with your treatment and hoping you don't get poorly off it. Also Wishing you a speedy recovery.
Sending the biggest hug to you

sue xxxx

Hi Jo,

So so sorry to hear the bad news, I'm gutted for you but from what little I know of you I know you will beat this thing. I will also be crossing everything in the hope that it doesn't show up anywhere else.

I spoke to a friend of a friend yesterday who has been thru the same thing, tongue operations, chemo and radiotherapy and he said it wasn't as bad as he thought it would be and he has been clear for over 5 years now. He told me he carried on drinking all the way through his treatment!...that made me smile.

I'm sure I will be in the same position as you in a few weeks time and even though I'm prepared for the worst I'm sure that wrecking ball will be paying me a visit. My surgeon (who I find a little bit cold if I'm honest) has been talking to me like it is already confirmed in his mind so I have no doubts about the outcome of the biopsies.

On a plus note I have had no ill effects yet from the tongue biopsy and am able to eat normal food after 2 days of milkshakes and baby food. I'm hoping that bodes well for the upcoming treatment.

Like you Jo I expect to be getting at least 6 weeks radiotherapy and dependant upon a PET scan and teeth x ray possibly chemo.

I find myself thinking "what have I done to deserve this?", I'm a nice person and its just not right!.....I'm sure you both feel the same.

Stay strong

Al

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Hi Jo,

Was just wondering how you are feeling?

Alan

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Morning Al

Still a little shell shocked really. I guess reality has kicked in .  I am still in a strange limbo waiting on full results and pet scan .  I was told by my consultant to make my way to ENT next tuesday even if i get no appt letter, so far i havent had one . Seems odd to just tip up when they are so busy , how do i squeeze in and how long will i wait in there! I am going to email one of the CNS  nurses to try and get it set in stone or clarification  . 

I think you and me are in unison on this  , both waiting on pet scan erc .

What county are you in ? 
 

Jo

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Hi Jo,

I've accepted that its cancer and sort of ok with it now (the diagnosis that is not the cancer)....I can actually tell people without bursting in to tears! :laugh:.

I live in a village called Flitton in Bedfordshire so my treatment will almost certainly be in Rickmansworth....its about 45 mins each way traffic permitting.

The surgeon called me yesterday to see how I was after biopsy and was realy surprised to hear I'm not suffering much because he said he took quite a bit away (should have taken the whole bloody thing!)....think I have just been lucky. i'm actually feeling well enough to have a beer later I think....certainly can't do any more harm!.

I got a call for my PET scan  yesterday and luckily they have a mobile unit which visits another hospital, thats only 30 mins for me....appointment is at 5.45 Monday and takes about 90 mins all told (60 for the dye to get round the system and 30 for the scan). I am preparing nyself for another anxious wait.

Anyway my thoughts are with you, stay strong and positive and stay in touch.

Sue how are you doing?

Al

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Hi Al 

I like your attitude.   I think I will feel better when I get some more exact answers next week.  I emailed one of the CNS nurses and she confirmed I arrive Tuesday even with no set appointment.   She told me  the PET scans are behind schedule at the moment but to ring them to see if I could book over the phone.  I rang them but It went to answer machine so I left a message, I wont hold my breath on getting a call back.  

I have found it very hard telling friends and family my daignosis ... i couldnt do it face to face or phone only by text as I got way too emotional .. feel like slapping myself most days ! 

Where was your other biopsy taken from , you mentioned neck I think , was it lymph nodes? When do you get your biopsy results? 

Wow, cant believe your got a call from your consultant , they seem to be on the ball down there.  I dont think I will see my consultant often , he said he would not be around next Tues when I return.  

Funny to hear your friend still drunk through his ordeal .  I thought medications that were needed for pain control during treament etc would have put that option out the window.  I am taking medication to help me sleep, well I get to sleep fine but then wake 2 to 3am and cant get back to sleep but the tablets have worked but I am told I wont be able to stay on them due to medications that will be looming during treatment. 

I am up in north Gloucestershire, just bordering Wales and Hereford.   

And Sue,  do give us an update after your next appointment..

Hugs all round

Jo

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